5-year research project investigating the impact of @RareDementia Support (RDS) group services for individuals living with, or affected by, rare dementias
UK (London & Wales), Canada
Joined January 2019
- Tweets255
- Following187
- Followers330
- Likes653
Our Impact researchers @SamRossiHarries & Emma Harding present Talking Lines - portraying @RareDementia experiences through a single line 📈📉🖋️✏️
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33rd Alzheimer’s Europe Conference, Helsinki #33AEC @Harrison_CR @PaulCamic @DrMPSullivan @DrTGrillo – at Helsinki, Finland
Rare Dementia Support Impact Study retweeted
What can we learn from language use in rare dementia caregivers support groups? Come and find out at P2-606! #AAIC2023 @RDS_ImpactStudy @RareDementia Oliver Hayes, @embrotherhood @CJHardy Emma Harding and Seb Crutch
Rare Dementia Support Impact Study retweeted
How rare is #raredementia? Check out our @RDS_ImpactStudy rapid review led and presented by Ollie Hayes at #AAIC23 @ P1-796 👇👇
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Co-authors @celbaou @KeirYong @PaulCamic & Prof. Seb Crutch
Rare Dementia Support Impact Study retweeted
We co-produced an online 💻educational programme for supporters of people living with:
- #PCA
- #bvFTD
- #PPA
Come check the results of our feasibility trial! 👉 Online Poster 75329 👈
#AAIC23 @RareDementia @AmberJohn715 @PaulCamic @DrMPSullivan @HoareZoe @embrotherhood
Rare Dementia Support Impact Study retweeted
Feasibility results from our @RDS_ImpactStudy - the online 💻 Better Living trial 💻 led by @Aida_Suarez_ and developed with supporters of people living with #PPA
#PCA and #FTD 👇
We co-produced an online 💻educational programme for supporters of people living with:
- #PCA
- #bvFTD
- #PPA
Come check the results of our feasibility trial! 👉 Online Poster 75329 👈
#AAIC23 @RareDementia @AmberJohn715 @PaulCamic @DrMPSullivan @HoareZoe @embrotherhood
Rare Dementia Support Impact Study retweeted
The boss of the food chain Iceland will climb Everest to raise money for a new treatment centre for people suffering from rare early-onset dementia thetimes.co.uk/article/icela…
Rare Dementia Support Impact Study retweeted
Thank you @icelandrichard @KentonCool and @BearGrylls for everything you are doing to inspire and promote this incredible journey towards the summit of Everest and the world’s 1st @RareDementia Support Centre
From the man himself, thank you for your support @BearGrylls! If you want to find out more and support my expedition up Everest for @BrainAppeal, follow the link: justgiving.com/campaign/cool…
Rare Dementia Support Impact Study retweeted
Delighted to announce the launch of ‘Dementia and Hope’ from @Innov_Dementia for #onedementiavoice - a free resource setting out the collective vision of a group of dementia orgs inc. RDS ✨ featuring contributions from @drcionucl’s Prof Seb Crutch + @MillievdBW + Trish O’Hara
Thread!
1) Today we launch an important new resource! 📢📢📢
A collaboration of 9 UK #dementia orgs
"Dementia and Hope"
bit.ly/3ZKA1Q3
Research poetry from the @RareDementia Support Impact study - link below to hear ‘A Glass Half Full’ read by poet @wilsonlawrence7
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Rare Dementia Support Impact Study retweeted
Our @RDS_ImpactStudy clinical trial protocol is live. We are testing a blended (online+human) programme to support families of people living with:
🔸Posterior Cortical Atrophy
🔸Primary Progressive Aphasia
🔸behaviour variant FTD.
Learn more about it 👇
clinicaltrials.gov/ct2/show/…
Check out our latest #protocolpaper led by @c_waddington + published in @JMIR_ this week 🤩 outlining #codesign, delivery + how we are evaluating the impact of videoconference-based @RareDementia Support group discussions @jmirpub @drcionucl @UCL_ECRs
Excited to share the recent @RDS_ImpactStudy protocol paper on the @RareDementia videoconferencing #supportgroups aiming to connect people affected by a rare #dementia #dementiaresearch researchprotocols.org/2022/7…
Rare Dementia Support Impact Study retweeted
Josh Stott form @ADAPTlabUCL will be talking at the #FTD @RareDementia meeting about our "Better Living with bvFTD".
This is a 6 module training course #Coproduced with families of people with #bvFTD.
@rdscanada @isftd @RDS_ImpactStudy @ftdnews @AFTDHope
Rare Dementia Support Impact Study retweeted
#diagnosis #dementia #Cymru #Wales?
We want to hear from you: bit.ly/3FWEaXQ
Share your experiences to make a difference to others in the future. Thank you
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Hoffem glywed gennych: bit.ly/3wAkQvb
Rhannwch eich profiadau i helpu eraill yn y dyfodol. Diolch
Rare Dementia Support Impact Study retweeted
🔊Actor, director & Headliner #HarrietWalter with a wonderful reading from @RareDementia's new poetry book #ThereIsSoMuchICouldSay - all created by members of the @RDS_ImpactStudy
Available ➡️ nationalbrainappeal.org/shop #DementiaActionWeek2022 #DAW2022
Rare Dementia Support Impact Study retweeted
As the theme of Dementia Awareness Week this year is diagnosis, we wanted to share this young onset #dementia diagnosis related fact with you. Let us know how long it took to get your diagnosis, or that of your family member.
Rare Dementia Support Impact Study retweeted
🏴#Diagnosis #dementia yn #Cymru?🏴
Hoffem glywed gennych: bit.ly/3wAkQvb
Rhannwch eich profiadau, beth sy'n gweithio, beth sydd angen ei wella, i wneud gwahaniaeth i eraill yn y dyfodol #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme
Rare Dementia Support Impact Study retweeted
🏴#Diagnosis of #dementia in #Wales?🏴
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We want to hear from you: bit.ly/3FWEaXQ
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Share your experiences - what works, what needs improving - to make a difference to others in the future #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme
🏴#Diagnosis of #dementia in #Wales?🏴
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We want to hear from you: bit.ly/3FWEaXQ
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Share your experiences - what works, what needs improving - to make a difference to others in the future #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme
🏴#Diagnosis #dementia yn #Cymru?🏴
Hoffem glywed gennych: bit.ly/3wAkQvb
Rhannwch eich profiadau, beth sy'n gweithio, beth sydd angen ei wella, i wneud gwahaniaeth i eraill yn y dyfodol #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme